Ann Guay and her son Brian, 12, who has autism, chatted over dinner in a pizza restaurant in Harwich Port. She says obtaining services is an enormous challenge.
(Vincent DeWitt for the Boston Globe)

With rise in autism, programs strained

Parents struggle to get services

By Carey Goldberg, Globe Staff | July 5, 2007

A decade ago, it took a few months to get a child into Melmark New England, a special school largely for children with autism. Now, the wait can be five years.

Boston-area parents, worried their child may be autistic, routinely face delays as long as nine months to confirm the diagnosis -- even though current wisdom holds that treatment should begin as early as possible.

And LADDERS, a Wellesley autism clinic, has all but closed its doors to new patients: "We're backed up well over a year here, and other clinics are struggling the same way," said Dr. Margaret Bauman, its director.

Statewide, the number of schoolchildren diagnosed with autism has nearly doubled over the last five years, from 4,080 to 7,521, according to soon-to-be-published data from the Department of Education.

Massachusetts provides some of the best care in the nation for children with autism, but the increase is straining the system and forcing parents to fight harder than ever to get help.

"Many people who haven't had the experience assume the hardest part is hearing your child has autism," said Ann Guay of Bedford, whose 12-year-old son, Brian, has the disorder. "But I think the greater challenge is trying to obtain the services you know your child desperately needs."

Nationwide, federal health authorities say that about one in every 150 children now has some form of autism, a sharp increase over past estimates. The rates vary from state to state for unclear reasons; Massachusetts has now reached a total of 1 in every 130 schoolchildren.

Advocates for children with autism point out that because autism tends to affect four times as many boys as girls, it appears that already more than 1 percent of Massachusetts school boys are "on the spectrum," which ranges from severe disability to lesser problems with communication and social interaction.

Some debate lingers about whether the sharp rise in autism rates is real or simply reflects better detection, but for those in the autism world the question is moot: Whatever the reason, the reality is that more children need their services.

"Autism programs are faced with enormous needs and no one feels like we have enough programs to meet the up-and-coming numbers of children," said Rita Gardner, executive director of Melmark, in Andover, which serves children in its school, in their homes, and in public schools. "I would argue that this is one of our biggest public health crises in this country."

To keep pace, school systems and state agencies are rushing to open more programs, train more teachers, and hire more therapists to help autistic children.

The Legislature is recognizing the need: Starting in fiscal year 2006, it gave the state Division on Autism its own line item in the budget, and in the pending budget, allocates $3.2 million to the division, up from $3 million in the last fiscal year.

The Legislature also passed a law in 2005 to maximize federal reimbursement for autism services, which often include intensive one-on-one therapy at home for children as young as 1.

But the whole system is visibly straining at the seams, from overworked clinic staffers and vacancies that go unfilled for months, to parents so desperate for help that they pick up stakes and move to towns whose school systems are reputed to have good autism programs.

"People will naturally do anything for their kids, so one of the forms of intervention is 'real estate therapy,' " said Rafael Castro, an autism specialist at Children's Evaluation Center in Newton. He has seen families migrate to towns such as Marlborough, Acton, and Lexington that have built good autism programs, he said.

A few years ago, when state public health authorities began providing autism services to children under 3, they expected about 500 children to enroll. At last count, they are serving more than 1,100.

The 7,500 schoolchildren diagnosed with autism make up less than 5 percent of the 163,000 Massachusetts schoolchildren who receive special-education services. But at Massachusetts Advocates for Children, a nonprofit that helps children with special needs, autism has become a dominant concern.

"I'd estimate that approximately a quarter to one-third of our intake calls are now from parents with children on the autism spectrum who are struggling to obtain appropriate educational services for their kids," said Julia Landau, director of the nonprofit's Autism Special-Education Legal Support Center.

She and Guay, a former lawyer who volunteers there, say some of the greatest challenges face children from low-income families who must overcome barriers of language or of a culture that imposes such a stigma on autism that they try to keep the disability hidden.

Psychologist Karen Levine, clinical director of autism at Cambridge Health Alliance, said autism clinics try to prioritize the youngest children and those who have yet to receive a solid diagnosis, seeing them within a month so they can begin receiving help as soon as possible. Bauman, of LADDERS, which is affiliated with Massachusetts General Hospital, noted that her clinic also squeezes in such cases.

Mounting research has demonstrated that intensive early intervention with children on the autism spectrum can bring significant benefits.

But the intensity of the therapy needed -- small children may receive up to 30 hours a week from the state -- can place heavy burdens on all concerned.

Levine said she knows of many families embroiled in battles with their school systems for more services. Often, she said, the schools see the families as pushy, and the families see the schools as withholding.